Best pancreatic cancer center?

Posted by lpaelevated4 @lpaelevated4, Oct 1 8:58pm

I will have original Medicare when I turn 65 years old early next year . I will need surveillance and /or surgery . I live in Los Angeles area and would like the best pancreatic cancer center to assist . Any recommendation? Prefer center that would monitor more closely . I am willing to drive or take flight for this . Thank you

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

What specific trial is this? Is it for stage 4?

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What is the clinical trial?

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Look up Tri Can on Seena Magowitz Foundation web site

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Dr Douglas Evans in Milwaukee, Wisconsin. The best.

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Also make sure your Medicare is primary and supplemental insurance to be secondary

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I mistakenly posted this under another question. This is in reference to the centers of excellence question.
https://www.mdanderson.org/cancer-types/pancreatic-cancer.html
We will be going there in Dec for a 2nd opinion. We were immediately assigned a Nurse Navigator from the GI Cancer Center who regularly calls us for updates, answers questions, and has really made the process smooth. Additionally, we will be lodging at the Hotel owned by MD Anderson, run by Marriott, that is connected to the hospital through a walkway. The process of getting medical records, pathology slides, and digital imaging transferred has all occurred without any issues.

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This question -- best place for pancreatic cancer care -- is especially acute if you are in an HMO, as I was when diagnosed in 2016. Over 60 million Americans are believed to be in HMO's, and over half the people that are in Medicare Advantage plans. There are significant benefits associated with HMO's (I won't try to list them here), but when you are faced with a life threatening health risk you lament your inability to go "anywhere" for care.

After recovering from the shock of diagnosis, I began to zero in on my options. You can go outside the HMO and pay for care somewhere else. But how much would it cost? You don't know if you can afford it if you don't know how much it would cost. I contacted several prominent hospitals, and not one would give me a price (they are used to billing after the event, and they don't know exactly how much care you might need prior to the surgery).

I grew up in the UK, and began following some patient sites like this one. I read of patients from the UK going to Germany for the surgery when British doctors said they could not operate. One of the preeminent institutions for pancreatic cancer surgery is the University of Heidelberg where they perform over 700 pancreatic surgeries a year, and it is renowned for excellent outcomes. I sent them all my records and I got a price -- about $70,000 in 2016, and they could take me almost immediately.

I was on neoadjuvant chemotherapy and scheduled for radiation before Whipple surgery. Doctors in Germany said "definitely no radiation."

I seriously considered going there. But in the meantime I was "negotiating" with my HMO and researching their capabilities away from my immediate area. I found a surgeon about 500 miles away who performed the Whipple often. He reviewed my records and, interestingly, he also said he could perform the surgery right away without waiting for me to have radiation. I went to him and all went well -- nine years and counting NED.

My oncologist said later if I had delayed the surgery to have the radiation the cancer might well have metastasized.

We're all different, and we have to follow professional advice -- but we can get more than one professional opinion. (I paid for some consultations, but not procedures, outside the HMO.)

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There is no "best" center I< O. I suggest a multi-disciplinary consult (Oncologist, Radiologist, and Surgeon) at a center that specializes in Pancreatic cancer however.

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Froedtert Hospital in WI Dr. Evens is one of the best surgeons in the US for pancreas cancer. His team includes some of the best oncologist in the US. Dr. Borazanci in AZ at Honor Health is also a leading oncologist for pancreas cancer. You need to go to where the specialize in this type of cancer. I am a 7 year survivor in AZ

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Profile picture for castell @castell

This question -- best place for pancreatic cancer care -- is especially acute if you are in an HMO, as I was when diagnosed in 2016. Over 60 million Americans are believed to be in HMO's, and over half the people that are in Medicare Advantage plans. There are significant benefits associated with HMO's (I won't try to list them here), but when you are faced with a life threatening health risk you lament your inability to go "anywhere" for care.

After recovering from the shock of diagnosis, I began to zero in on my options. You can go outside the HMO and pay for care somewhere else. But how much would it cost? You don't know if you can afford it if you don't know how much it would cost. I contacted several prominent hospitals, and not one would give me a price (they are used to billing after the event, and they don't know exactly how much care you might need prior to the surgery).

I grew up in the UK, and began following some patient sites like this one. I read of patients from the UK going to Germany for the surgery when British doctors said they could not operate. One of the preeminent institutions for pancreatic cancer surgery is the University of Heidelberg where they perform over 700 pancreatic surgeries a year, and it is renowned for excellent outcomes. I sent them all my records and I got a price -- about $70,000 in 2016, and they could take me almost immediately.

I was on neoadjuvant chemotherapy and scheduled for radiation before Whipple surgery. Doctors in Germany said "definitely no radiation."

I seriously considered going there. But in the meantime I was "negotiating" with my HMO and researching their capabilities away from my immediate area. I found a surgeon about 500 miles away who performed the Whipple often. He reviewed my records and, interestingly, he also said he could perform the surgery right away without waiting for me to have radiation. I went to him and all went well -- nine years and counting NED.

My oncologist said later if I had delayed the surgery to have the radiation the cancer might well have metastasized.

We're all different, and we have to follow professional advice -- but we can get more than one professional opinion. (I paid for some consultations, but not procedures, outside the HMO.)

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@castell Having a background in the oncology field and a wife with pancreatic cancer, I think it's a good rule of thumb to look for the regional center in your area that hosts clinical trials in PDAC (clinicaltrials.gov is a good place to start). Companies doing clinical trial research are spending a large amount of money to get their drugs approved, and are going to focus on conducting their research where the best care can be delivered and some of the brightest minds reside.

In the US, there are a number of such sites - we live in Idaho, but are commuting to Huntsman in Salt Lake City for the Phase 1 trial she is participating in. However, for the early stages of treatment - when traditional chemo or surgery is recommended, you are more likely to find a very good doctor in your local area, as we did in Boise. That may be tougher if you are in a rural area, however.

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